I know I am behind in keeping you all up to date but I needed a few days to distance myself from the last chemo session – my fourth. Today I feel like I am actually forgetting about the bone pain. In so many ways, the bones achiness is indescribable. You can’t imagine the amount of times I fantasized about someone wrapping me tightly in blankets, squeezing out the sense of collapse in my bones, and then tossing my wrapped body in front of a speeding truck. Crushing my bones would settle any bone pain helping me to breathe calmly again. Warped, I know, but that’s the beauty of Percocets!
There is so much to catch up on. I am relishing the few days in between chemo sessions where my head is actually clear and I feel physically able to take in a day free of frequent naps. A lot has happened since I last wrote. My Dad accompanied my Mom to Toronto for my third session, which was the last session before they changed the chemo cocktail. And this all happened before my cousins, Susan and Daisy came down to look after me for my fourth round of chemo. Maybe I can get it all into this posting, I will try to remember all the good bits best that I can.
Winslow came with me to pick up my Mom and Dad at Union Station. It’s a nightmare picking anyone up at the train station because you have a block of taxis lined up on Front St. waiting for fares. I greeted my parents and walked them a block or two past the station where Winslow parked, but not until after they stopped for some “street meat” to bring home to eat. Funny, I don’t think my parents has ever been to La Belle Province or The Montreal Pool Room for “steamies” but they were all excited about the “street meat” in Toronto.
I have never spent so much time alone with both my parents. It was a weird feeling having them both in my space. My father, for one, I began to realize, is not an easy person to live with. I remembered in the beginning of all this how I wasn’t sure if I wanted my mother around after I had surgery. My Uncle Tom recounted to me a telephone conversation he had with Cory, my brother, before my mastectomy. Tom had asked Cory if my Dad was coming to Toronto, Cory told him our Dad would not be coming. When Tom asked why, Cory said “Because my Dad annoys my Mom when he’s around her.” Tom thought to himself and then replied back, “Gee, that’s funny, because when I talked to Norine she said your Mom annoys her when she was around!” For the most part, my Mother and I got into a groove over being together during my chemo sessions, I think she was coached to keep an open mind and not to stress me out more. All of which I appreciate more than I could have imagined. We would shop together, walk around together, enjoy the company of my friends together. It was – IS more than I could have hoped at mending my relationship with my mother.
My father, I could tell was not coached by family or friends. At all. Therefore, I saw the annoyances, which grate on my mother, more than I cared to. Growing up my parents were barely ever home while they worked anywhere between 12-16 hours a day at the restaurant. We would see them maybe a day and a half each week growing up. Which was probably why I was caught off guard with my apartment toilet seat being up each time I had to use the bathroom! I hear of this occasionally from girlfriends who have live-in boyfriends or husbands but it can’t be this serious of a problem. Can it? This was MY apartment and HE was still my guest! When visiting the household of a lady, TOILET SEAT DOWN. Always! He followed this up by throwing compost in my paper recycling because he didn’t look under the kitchen sink to find the proper garbage receptacle. I ended up cleaning everything after a day spent at chemo. A couple of days later he fell on his face while walking along the street. He stepped aside for some kids to get by and somehow tripped on the sidewalk. He came back into my apartment from his 10 minute walk with a bruise on his cheek and proceeded to show me the cuts and scrapes on his elbow and knees. It’s not that I didn’t sympathize with him but I was a little exhausted while I was soaking cotton balls with peroxide and cutting band-aids to fit the surface of his cheekbone. I started to think “Who’s suppose to be taking care of who here?!” He was suppose to be here to help make my life a little be easier while I napped away the effects of chemo. I did wake up once after an afternoon nap to a clanging noise and furniture being moved around due to Dad cleaning my kitchen. So he kind of made up a bit for being an annoyance.
Around the time they were here I had also been approved by OHIP to receive seven Neupogen injections for seven days after chemo.These shots would help me produce more white blood cells during my chemo treatments. I would need a nurse to administer the shots, even though I could be taught how to inject myself with the Neupogen, I had no interest in handling needles. PMH arranged for a home care nurse to call me. As it turned out, I lived so close to a clinic, where nurses could administer my injections, the coordinator suggested for me to walk there. This was most preferable with most of their patients receiving Neupogen, in my neighbourhood, as it meant not having to wait around for a nurse to come to your door. The coordinator gave me directions to where the clinic was located and it all sounded great until I got off the phone and looked over my notes and started to realize: clinic south of King St.+ in Parkdale + separate far entry = Methadone clinic?!!
“Honey, do you want me to walk with you to the clinic?” my Dad asked. I was almost going to accept but I remembered my suspicions and I quickly told him I would go on my own, taking public transportation if I felt too weak. Instead I brought them to Princess Margaret Hospital, and gave them a tour before I picked up my needles and medication. It was their first time seeing the PMH facilities which has been like a second home to me these last few months. They were impressed with the “newness” of the hospital. It was very different from what my Mother had probably told Dad about Women’s College Hospital (who are in the process of their own facilities renovation). I showed them Chemo Daycare, the Breast Centre, and finally the PMH pharmacy. I think the pharmacy impressed them the most because the great majority of the 20 pharmacists looked like they were of Chinese descent. Everyone receiving medication from the PMH must speak to one of four pharmacists before paying for their drugs, each and every time. I got called up to pharmacist’s window number four and spoke to a young petite Asian woman about when I would be receiving the medication, what the procedure was, and how they would provide a cooler bag for me to travel with the meds to and from the clinic. I also asked about the process of receiving Neupogen. The price of these seven shots cost $1400 of which OHIP does not cover unless you apply for coverage, which I suspect Dr. A had done before my second chemo treatment. Dr. A and I never really discussed the logistics of Neupogen and chemotherapy to any full extent. I am only piecing stuff together, from discussing stories with a couple of other previous breast cancer patients.
Neupogen is usually covered by private health insurance but from what I have heard it is absolutely necessary when going through chemotherapy. White blood cells become eviscerated during chemo. Without Neupogen I ended up at TGH with hardcore antibiotics to fight an infection my immune system could not fight on its own. This is what I do not get. Neupogen is a vital drug needed during chemo to sustain proper blood counts to continue with chemo treatments. If this is the case, why isn’t it covered under OHIP? Or the whole Canadian medicare system, for that matter? Same goes for my three $40 dollar per anti-nausea pills. We know these things work. Why are the pharmaceutical companies charging such high rates? Why aren’t these drugs readily available for all cancer patients? I know, I know, money has to be made by someone, somewhere…
It’s been an eye-opener navigating around Cancer with no private health insurance. Thinking back to this whole process, I realize I am very lucky to have the medical professionals I have had. I’m thankful for my medical team for staying on top of things and knowing how to work a “system” while I try to figure out what my next steps are with Cancer. Steps like whether I need radiation after chemo or not.
Even though I did not discuss it in the last couple of months the thought of having to do radiation weighed heavily on my psyche. The possibility of having to ruin a breast implant I haven’t received yet let alone the mad scheduling to switch the expander to implant before radiation would make me cry at night. In the weeks of waiting for Dr. L to come back to tell me what he had discussed with the pathologist I vowed to be defiant and to question every detail if he came back with another verdict to radiate my breast. I admit, I trusted Dr. L’s diagnosis less than any of the doctors I have had at this point. Every Cancer doctor, so far, has needed me to make quick decisions on monumental events which has broken me mentally, emotionally and physically. I had always trusted every doctor’s diagnosis even Dr. C’s (I only asked for a second opinion in the hopes of buying me a little time from having to deal with getting rid of one of my breasts). I defied Dr. L because I needed him to give me definite reasons to radiate. I was told by a social worker it was more than in my right to question, question, and question until I was sure about everything. I could tell Dr. L was uncomfortable with my defiant behaviour but I didn’t care. If I have to make quick decisions which break me, every doctor I see had better be ready to give me their best solid rock of an answer about why they think I should be put through more trauma.
We met up again a couple of weeks ago, Dr. L’s decision was a little more thought out this time around. He started by telling me I did not have a full mastectomy, if I did the scar would have stretched from my breast to my armpit. Rationalizing to myself later, I would have said to him, my surgeons decided to implement a tissue expander for me, because my Sentinel Lymph Node dissection was negative. There was no way a tissue expander would have gone in had it been a different outcome. I think, I hope I would have been okay with that. Even if I wasn’t okay with it, I’m sure I would have understood why. If any of my lymph nodes showed positive for carcinoma there would have been any discussions about expanders, implants or reconstruction at the time of my mastectomy. Period.
Dr. L still seemed pro radiation even though he came to the conclusion it would ultimately be up to me to decide. He pointed out I fell into a median where two opposing views were just as valid as the other. He concluded if the cosmetic outcome of my breast implant was important to me they would monitor my progress closely for the next 5 years (as they will be doing anyhow) or if I told him I wanted a higher chance of no recurrence, I should go with radiation. I WANT BOTH. Wouldn’t anyone? He couldn’t give me numbers or percentages the way Dr. A could convince me before I placed my bets on which chemo to use.
I asked if I could have a second opinion. He said, “Of course.”
I met with Dr. Catton within a couple of weeks to discuss her opinion whether I needed Radiation Therapy or not. She gave me the pros and cons of my individual case. The cons being my age, size of tumour, and the grade of the tumour. The pros were I was doing chemo, I will go on hormone therapy, and my lymph nodes were clear. Ultimately, she sided with radiation not being a necessity in my case. I asked her what was the average of not doing radiation, in my case, as opposed to doing it. She said the percentage of a non-recurrence with radiation was 90% if I did it. Without it factoring in what I was doing and my case she concluded I had an 85% chance of non-recurrence. Could I live with a 15% chance of getting another cancer as opposed to a 10% chance? I was so overwhelmed and happy with her prognosis, tears started streaming down my eyes. She reminded me these were just averages. There was a chance I would never get a recurrence without all this adjuvant therapy, as I feel has been the case all along. It’s all a gamble and no matter how much I do to try to prevent a recurrence there are never guarantees. At some point I have to look at my quality of life. Sure, I could get in an extra 5% in, but it would need radiation and then more extensive surgery which requires skin from my back to replace damaged skin on my radiated breast and a cosmetic result which would let me down mentally. I will take my chances at a 15% risk of a recurrence.
It felt like a huge weight had been lifted after several weeks of anticipating the worse case scenario. I wasn’t going to lose another breast and my reconstruction will move forward and I could put this crap behind me.
Susan and Daisy, my cousins, came around for round four of chemo. My Mom needed a little break coming to Toronto every 3 weeks, so their visit was a welcome. Susan stayed with me in my apartment while Daisy stayed with her sister Eva. It was great having them around as we really haven’t hung out with just the three of us, probably since I moved out of The Plateau in Montreal. They lived in an apartment a couple of blocks from me, way back when I was in the last year of university, and I would drop in to their place whenever. In fact, I remember one time I was on the 80 Av. du Parc bus, coming back from class, as we approached my bus stop I and the whole bus heard gunshots! The whole bus swayed as we looked out the window to see some guy running along the street being chased by a couple of other dudes and I remember thinking calmly, to myself, “Hmm, maybe get off the next stop and drop by Daisy and Susan’s place. Maybe stay for dinner and then go back home. Coast will be clear by then.” It was convenient having my cousins close by, in all sorts of occasions.
Round 4 of chemo seemed a breeze at first. I was told there would be no nausea this time around so there was no need to prescribe the anti-nausea pills but I was warned about bone pain. Percocets were prescribed to me to use at the onset of any bone pain which I was suppose to expect after getting my Neupogen shots. I had three days of bliss shopping, eating, and chatting with my cousins before the achiness started. We were at IKEA looking for a shelving unit for Eva’s place when my hips started to feel heavy. Susan told me to go sit down somewhere while she and Eva figured out the shelving. I sat in the kitchen table display section the whole time and I gotta say everyone looks at the cheapest unstained pine table, Ingo, which I, myself own. Thirty minutes passed and I went to check if a shelving unit was chosen. It wasn’t so I asked for the keys to go take a nap in the car. The bone pain was starting to creep into my legs.
Sunday morning Susan started packing for her drive back to her hubby and kids in Montreal and I woke up to a massive sore throat (which I’ve recently discovered was a symptom of having Thrush). She had wanted to stay to bring me to my Neupogen appointment but she had thrown out her back while we were loading the shelving into her car the night before. I insisted I would be all right and it felt weird both of us having geriatric aches at the same time, but before “our time”! Anyhow, after Susan left I decided to take a Percocet to see how they would work on the pain. I was high as a kite at 10:00am.
The pain in my throat had subsided much but I called Darrin for assistance to get me to the meth clinic. In the end, he messed up the time and I ended up taking the bus and walking to the clinic after arranging for him to pick me up afterwards. Walking to the bus stop I knew it wasn’t such a great idea to be on Percocets and have bone pain on my own. My legs felt wobbly and my head was flying. I made it to my appointment and discussed with the nurse how I did not think it was possible for me to walk myself to the clinic anymore with this bone pain. They would have to provide me with a home care nurse to come to my apartment for any future Neupogen shots. With this arranged I went outside to wait for Darrin. I sat on a park bench zoned out hoping none of the recovering addicts would ask to sit beside me.
Even though the pill bottle stated to “take the pills every 4 hours or when needed” I believed the emphasis was on the “when needed”. I took the pills every 4 hours the first day and felt somewhat numb the next day. Falsely believing the pain was subsiding I decided to take a pill every 6 hours instead and almost bypassed taking the pill in the middle of the night. Not waking myself to take a Percocet on time, as the night before, was the biggest mistake I could make through this chemo experience.
I woke up at 4am groaning in pain. Tired and sobbing I had to mentally convince myself I was able to walk, the short distance from my bedroom into my kitchen, without my bones falling off my body. I felt the heaviness of my skull on my neck crushing into the base of my spine. My hips felt like they were creaking as I lifted each leg in front of me. It felt like all the small bones in my foot would crumble and create a domino effect for my skeleton to collapse. My finger tips, as I reached for my bottle of pills, the same fingers (and toes) we immersed in bags of ice chips during chemo to prevent my nails from falling off after, felt like I had slammed a door on them. My finger tips still feel the residual pain as I’m typing in these words. I swallowed the Percocet and quickly wobbled back to my bedroom. I laid in my bed feeling sorry for myself blubbering and in disbelief wondering why this was all happening to me. I felt eviscerated, I just didn’t want to play this game anymore. No more chemo, no more challenging doctors, no more blood work, no more needles. NO MORE!
Before the tears on my cheeks were dry I bravely twitched my foot. Nothing. I moved my right leg. No more pain. Did I just imagine all that bone pain? Did that really happen? Was I being melodramatic over all this? For Christ sakes, what was all this crying for? Was the writhing in pain really necessary? And that, my friends, is the beauty of how fast Percocets work.
I ♥ Percocets.